New Year…(Sort Of) New Samantha

Happy 2016 blog readers!! Seems like 2015 just began, and here we are! Our family rang in the new year as we always do, with matching PJ’s, a gift exchange, a yummy dinner and a trivia game that puts all others to shame. There is no place we’d all rather be than together. Trust me, I know how amazingly blessed I am to come from the family that I do. The way we love each other is just beyond. Okay, enough bragging about my wonderful family! 😉

This new year I am filled with hope, and not just the kind of “fake” hope we all fill ourselves with, with the promise a new year. This is real, genuine hope! At the end of December Dysautonomia International released an abstract regarding a study around the effects of exercise on people with POTS (the Dr. Levine protocol). This was (obviously) a controlled group of POTS patients in a very controlled environment. I want to add in the disclaimer that POTS is a very complicated condition, and no two POTS patients are the same. However, of the patients that complicated the exercise program, in addition to maintaining their medications, there was a 72% cure rate. Yes, CURE rate. These people no longer met the criteria for POTS. They no longer had the 30+ beat per minute heart rate increase upon standing. This. Is. Amazing. Additionally, almost all (the exact number escapes me) of the patients reported having an increase in their quality of life. Also, amazing. Now, before everyone jumps on the “why doesn’t everyone with POTS just do this and make themselves better??” bandwagon, let me explain…people can develop POTS from several different root causes. If the root cause is something that can be cured, then a person has a better chance of a recovery from POTS. For example, a virus. If a virus caused you to develop POTS and the virus is cured, then you stand a better shot at recovery from your POTS symptoms. We are fairly certain that this is my circumstance from my lyme and mono diagnoses. However, if you obtained POTS due to an autoimmune issue or traumatic injury to the body that is non-reversible, you are less likely to see recovery. But, there is ALWAYS hope, for all of us! I am so excited for Dr. Levine to release the specifics of this exercise protocol so I can look at it, and hop aboard! Look for future blogs tracking my journey. It is also important to note that all patients need to be followed by, and monitored by, a doctor if you take on this exercise program. Luckily for me I have a cardiologist who is super supportive, and a cousin who owns a gym…they’ll make sure I don’t fall on my face…and if I do fall, they’ll laugh, and pick me up again. If you are interested, here is the link of the abstract:

Additionally, I’ve made some pretty big decisions about my professional life that I’m very excited about! Before Christmas break I was in a funk…a big one…a major one…a massive one. I was down right miserable. I was so unhappy that there were days I actually seriously considered handing in my resignation. I started so many drafts of the letter I could fill a whole notebook. Those of you who know me personally know this is NOT in my nature, and I have a major love affair with my career. Being a teacher is part of who I am in my soul, it felt so terrible to be in that negative place in my mind. It wasn’t just one thing, it was everything…and I couldn’t get on top of it. I really think that I let the fatigue from my POTS creep into my head and it totally reeked havoc. I needed this break to refocus, re-energize, and really think about what I want…stay tuned for a new year of changes in this arena too! Big things are coming…POTS be damned!


Other than that, I’m just ready to take on 2016 with an open mind ready for health and changes. As I reflect on how I feel today versus how I felt a year ago…I’m not even the same person. I have made so many strides forward. I have WAY more good days than bad…and isn’t that the ultimate goal?! I’m proud of myself for 2015, and I’m ready to tackle 2016 with the same open heart and mind.


Happy New Year!!




Santa, Sugar Plum Fairies and Surgery?!

Ho Ho Ho! Merry…Surgery!? Yes, that’s right, I had the surgery, and I referred to it as merry…it went very, very well! The procedure itself was less than an hour and it was virtually painless. I won’t know anything for about a week regarding if it actually worked (solved the issue), or the results from the samples they sent out…but for now, I’m calling it a success!


If you ready my previous blog, you know how stressed I felt about going under anesthesia. I was nervous that my POTS would cause complications and things wouldn’t go smoothly. I am so happy to report that everything went fine…and above and beyond that, every single person I talked to in the surgical unit KNEW what POTS was. The nurse who checked me in and monitored me, the medical assistant, the anesthesiologist and (of course) my doctor. Not only did they know, they appeared confident in their ability to handle the complexity of my case. My husband kept saying “wow, it seemed like he/she knew what POTS actually was…” It blew our minds. The nurse actually made more comments about how to pull off a hair net than POTS. Hopefully it means that the word is spreading!


I drifted peacefully off to sleep and the next thing I knew, I was groggy, but awake (!!!) in recovery. Rumor has it I told my husband that he looked like my children (phew! 😉 ) and that I wanted a puppy. I hung out in recovery for a few hours while I got my feet under me and they tried to manage my pain. My heart rate and blood pressure were stable the entire time…THIS WAS HUGE! My body actually behaved itself!


By the time I was discharged I was very sore, and very very tired…but also VERY VERY excited! It just so happened that two of our best friends were in the hospital that same day…delivering TWINS. I can honestly say that any bit of soreness and pain just melted away when I put those newborns in my arms. Holding them gave me such hope for the future. It sounds cliche but it really made me feel like everything was right in the world. It was one of those rare moments in life when the world stops for a second and you fall in love instantly. Thank you Nicki and Marc for bringing such amazing little people into this world. 🙂 They gave me a feeling of hope for the future.

So, for all my potsie readers…do your research, surround yourself with a good medical team, find a doctor you trust, and know that surgeries can be okay. I think a little bit of fear in this situation is good, because it means you will cover your bases…but I hope this blog will serve as a little ray of hope. Everything I read beforehand were horror stories…but that’s not always the outcome!

Merry Christmas to you all, and thanks for reading and supporting me as I make my way through this journey.


‘Tis the Season…


Wow! Welcome to December! It feels like 2015 just began, and just like that, it’s over! What a year it’s been! Full of ups and downs and everything in between. But, before I turn into an emotional sap, let’s keep this blog moving!

The holidays are in full swing in our household. We hosted Thanksgiving at our house, immediately followed by putting up our Christmas Tree, covering our house in white lights, the return of our Elf on the Shelf, Christmas movies, Christmas parades and (like most of us…) trying to fit everything into this jammed packed full time of year! Phew. I’m exhausted just typing it out!

The good news is this…I’ve been doing okay! The major battle these days with POTS has been fatigue. Not just the “oh, I’m a little sleepy” kind…the “there is no way you are getting your ass out of bed until you sleep for 3 more hours” kind! It’s a challenge when I have to be at work at 7:30, and at the hockey rink on the weekends. But, we push through it and keep plugging away. Thankfully I have the best husband ever and he does morning duty with the kids…if I had to do that…well, I just couldn’t do that! 🙂 All in all (for right now!), POTS is something that I’m living with, not something I’m struggling with and that’s pretty nice! Now, everyone who is reading this PLEASE knock on wood, I do NOT want to jinks myself!! 🙂


If I’m perfectly honest though, I felt the need to blog tonight and I wasn’t really sure why. Typically I blog after a big event, or after something major has changed with my health. Tonight, that’s not the reason. As I sit here snug in my bed, I think the reason is more because I’m a ball of nerves about this upcoming week…for several reasons, and I clearly just want to let it all out! One reason being that this time of year always sneaks up on me and then hits me like a ton of bricks. When I was 19 I experienced the loss of a person in my life…a person that I was not ready to lose, no one was. When you are 19 you feel young and invincible…you feel like you have the world at your feet and everything is a possibility. It just never crossed my mind that a possibility would be losing someone in a tragic, careless, horrific, car accident. 18 year old’s are not supposed to die. They just aren’t. And it still haunts me…even to this day. December 12th is just the worst day of the year. On this same date three years later my grandmother, the sweetest woman to walk the planet, also passed away, from Alzheimer’s. Her death was far more easy to comprehend…she was an “old” lady, she was suffering, and it was her time to go. Still though…December 12th is just crap. I try to honor this day by lighting a candle for them…remembering the silly stories…and hugging my babies extra tight. I try to make it a positive…but sometimes the sadness just creeps in.


Secondly, I’m set to have a minor procedure (I like that word FAR better than minor surgery) done on Thursday, and I’m terrified. Now, before anyone freaks out, it’s not a huge deal, and I’m going to spare the male readers of this blog the specifics. It’s a lady issue, and the doctors are trying to save me from having to have a full blown hysterectomy at 32…which I appreciate! None the less, there is anesthesia involved and that’s where it can get complicated with POTS patients. I cannot tell you how many stories I’ve read of potsies having a really hard time going under, staying under, and waking back up. Sounds nice doesn’t it?! Because we have no control over our heart rate, breathing rate, and blood pressure…and our bodies tend to just throw these systems out of wack on a whim, it can make for a very complicated situation. Deep down I know that it will all be fine (it just has to be!)…these doctors know what they are doing, and I’ve voiced my concerns. They’ve even been in contact with my specialist at Mass General to make sure all the i’s are dotted and t’s are crossed…but still!! There is just a level of anxiety around this that I cannot kick. I have been doing well the past few weeks, I don’t want to move backwards.

Finally, with these things on my plate, the everyday little stuff (the grad school homework, the errand running, the stress at work, the junk that everyone always deals with…) just seems like it can be too much. My fuse is a lot shorter than it normally is. I can be punchy at times, over sensitive at others and bitchy more often than I’d enjoy 😉

…but I’m ALWAYS 100% grateful for my family and friends who love and support me no matter what. It means the world to have a group of people who help when it gets dark like this for me. I just love you all so much.


Anyway, I’ll make sure to blog this crazy experience…I’m really hoping that I can publish a blog that will make other POTS patients feel HOPEFUL about undergoing a medial procedure. Let’s hope I’m that statistic where there were no complications and everything worked out fine!

Now, I’m serious…everyone knock on wood!!


Time to brag about my Colby <3


One of the most difficult parts of having an illness, is trying to manage it while still being a good mommy. As I’ve talked about in several other blogs, it’s a constant battle between trying to take care of my health, and my children. My number one job in this world is raise these amazing babies, and there are times when I feel like I’m failing. I feel like they get robbed…POTS is robbing them of healthy time with their mother, and I hate POTS for that. BUT! Something amazing happened this week that reminded me even though this life might not be what I consider to be *perfect* for them, they are pretty perfect regardless!


For the first time I was on the parent end of a parent-teacher conference. I’ve done 8 years worth of these conferences being the teacher, but I was SO nervous to be the parent. I’m not sure why I had so much anxiety over the meeting…I love Colby’s teacher, and I know that he’s as smart as a whip. But, being the first time, and being so worried about my kids, I wasn’t sure what to expect. To make a long story short, Colby is a total rock star at school. He is meeting standards and learning new skills everyday. His math skills, reading and writing are progressing so quickly, one of his pieces of art work was chosen to be displayed in an art show, and he is quite the athlete (no surprise there!) in PE class. All of that was so nice to hear…but the part that really blew me away was that each and every teacher told us that Colby is kind, a good listener, a great friend, always follows directions, and is a pleasure to have in school. He earns citizens awards for his positive attitude and for overall being a great school citizen. Even writing those words and thinking over those conversations brings tears to my eyes right now. Colby really is such a kind person at heart, and it makes me so proud.


I truly do believe that POTS syndrome may be part of the reason he is who he is. He can be so understanding and sympathetic when I’m not feeling well…and those qualities are translating into his life at school. He is always rubbing my back and tucking me in when I’m in the middle of a flare. That little boy has the biggest heart. So, thank you POTS for providing my children the experiences that will help to make them empathetic, wonderful people. (yes…I just THANKED POTS for something…don’t get used to it, people!) 🙂


I’m so happy that Sophie has such a positive role model to help her grow up!


On the health front…it’s been a pretty crummy week! I’ve been fighting off the cold that the kiddos had, and the cold finally won. Coughing, the shakes, body aches, sweats, sore throat…you name it, Paul and I have it. Ugh. As my POTS readers know, cold meds aren’t safe for us because they all tend to mess with blood pressure, which is a no-no. So, I’m trying to flush it out with water and Tylenol. As of print time…the cold/flu is winning! 😦  Here’s hoping it passes quickly and doesn’t cause a major flare!

Until next time! 🙂


party_32Yep, you read that correclty…32. I’m about to turn the big 3-2. Now, if you’re younger than me, please keep all of the “omg she’s sooooo old” to yourselves, and if you’re older than me, I’ll save you the trouble and openly admit that 32 is still pretty young in the grand scheme of things. Okay, now that we have that all squared away I’ll move along…

For some reason the thought of this birthday is hitting like a ton of bricks. It took me a long time to figure out exactly why. I’ve always loved birthdays! My parents always made a pretty big deal of them…we got to pick our favorite dinner, we had cake, gifts and parites…birthdays were a big fun event. I’ve carried that tradition on with my own children…we make a big big deal about it. It’s important to celebrate the people we love! I began to wonder if I was dreading getting older? That seemed silly…32 really isn’t old…and I do believe that age is just a number, it’s all in how you feel (..and with POTS sometimes I feel 100…but I digress…)…and trust me, working with high school students all day long, they keep me young! I’m up to date on my current slang terms “bae, basic, whip” yep, I know them all! 😉 “Pang, you’re so awesome for a 30 year old”…one of my 16 year old students informed me on Friday…this is the biggest compliment you can get from a 16 year old! 😉


Then I began to wonder, can I possibly be having a mid-life crisis?! No way. I love my life. I have no regrets. I have no desire to buy a convertible and party all night long…that just sounds exhausting! 🙂 Then, it hit me. When I turned 31 I was bound and determined to not be sick for a whole other year. I told myself that 32 would be different. I would be able to celebrate my birthday in HEALTH…and well, I’m not there. Laying in bed one night I actually said these words out loud to my husband and I began to cry like a little girl…yep, this is DEFINITELY why this birthday is feeling so terrible.

Now, please do not get me wrong, and do not mistake my break down for defeat! I’m still up for this battle, and I’m still ready to fight this. I wake up every day and continue to try to kick POTS ass…but, there are some moments that still hurt so deeply I can’t get out of my own way. I’m still adjusting to my life and this new normal. I still yearn for the days of Happy HEALTHY Birthdays…and maybe I will see another one someday…and maybe I won’t. But, I think I need to give myself a chance to feel all these things and accept the fact that some days it’s okay to grieve the person I was and the life I was expecting to lead. That’s normal right?! I sure hope so!


So, here’s to turning 32…and instead of promising myself that I will be cured this year, I am going to promise myself that I will keep fighting this year! I can feel big changes coming my way, and I can’t wait! 32 will be the year I graduate from grad school, the completion of my 8th year teaching, my 9th year of marriage, my 7th year of being a mommy…there is a lot of good coming…so 32 here I come!


October is dysautonomia awareness month!


October is dysautonomia awareness month…to celebrate this event, my body has decided to throw itself into the biggest flare I’ve had since last December…if you’re a dedicated reader of this blog you know that last December was the lowest of the low for me. Thus far, October hasn’t been any better. I’ve been experiencing tachycardia…at time in the 200 beats per minute range, pre-syncope, extreme dizziness, migraines, intense brain fog, and an overall feeling of extreme fatigue. Sounds like fun doesn’t it?! 😉 I’ve continued to manage my day to day…but just barely. By the time I get home from work I need to lay down for pretty much the rest of the night. It’s been hard on my husband, on me, and on my children. That by far is the worst part. I hate when I hear them say “Mommy can’t…she’s tired” it breaks my heart into a million pieces. I can feel the depression of chronic illness floating in, and I can cry at the drop of a hat. It just really hasn’t been a good few weeks.

12038454_10102653432596659_7768277362766908275_n(my world)

So! How have I been trying to cope?! Well, this time, I’m trying not to hide what’s going on. I’ve been much more upfront with my support network…”this just really isn’t going well”…this was an incredibly difficult shift for me. I put aside my natural instinct to say “I’m okay…” and I told the truth. In turn, they have stepped up in amazingly helpful ways!

My sister made us a delicious dinner and her boyfriend (one of my best friends) brought it over and ate with me…

12063541_10207973075144243_4766776010123609581_n(yummy stuffed shells!)

My mom, sister, brother-in-law, and second mom came over and deep cleaned my house…we’re talking they scrubbed all of the baseboards, behind the stove, the dryer vent, in between the tiles…every nook and cranny this house has! It’s still sparkling!

11209701_10102663320655909_5917807805694324115_n(Mom, Bryce, Justine, Lynn…quite the cleaning crew!)

My best friends took my babies for the day and totally spoiled them rotten! The kids came home so happy and I was able to have a break for an entire day.


My cousin brought my nachos, breadsticks and ice cream for dinner…then we sat and watched BRAVO for a few hours…needless to say this is ALWAYS helpful! 😉

12109281_10102653433564719_7528957097574244663_n(My cousin, Amy ❤ )

My aunts have checked in, my dad came over after work and played with the kids, my in-laws have come down (an hour drive for them!) to cover the kids so I can attend class or get my haircut, my co-workers are checking in and making sure I don’t need anything, friends are texting, messaging and letting me know they are there…the list goes on and on and on…

12088551_10102654684293249_71483194400276059_n(Paul, Millie and Sophie!)

It’s because of this help that I can continue to manage. Does it suck? Yes. Is it hard? Yes. Does the depression scare the crap out of me? YES! But, I know that this is just a flare, and that I will get on the other side of this at some point.

Additionally, another dark side of being ill is that you will lose some people in your life too…or your relationship with them will drastically change. Not everyone is up to the challenge of sticking around as you battle this. Not everyone will understand, and not everyone will be kind to you. Your feelings will be hurt. It’s not a good thing…and it’s not a bad thing…it just is. Instead of trying to fight and hold on…I’ve learned that is far easier to just let it go. There are much bigger battles ahead. Hold on tight to the people who listen, who care, who forgive you for not being yourself and who treat you right…those are the people who will help you see the good days again! ❤


Sometimes It’s Lonely.

Well, we’re off to another school year with a bang! Colby transitioned into kindergarten like the pro that he is, Sophie is doing great being the “big kid” at daycare without her big brother around, I have been making it through my workday in an *almost* fully upright position and have started my last year of graduate school, and Paul continues to be super-dad-super-husband helping me in every way that he can. Really, I can’t complain! I was so nervous about all of these transitions, these times can be challenging for any family, let alone a family that has a mommy who is chronically ill.

As you saw in my previous posts my summer was wonderful. I felt good, I felt rested, and I felt more in control of my life. It was a pretty big blow to my living on cloud 9 when the school year started up again. I can no longer sleep when I need to, take breaks when I need to, or just put my feet up when I need to. When you’re a teacher, your world revolves around your students who need you to be your best…all the time. It’s a massive amount of pressure for a person who sometimes struggles to stand. (literally…people with POTS use three times the energy of a healthy person just by standing up…fun…) Now, do I put a lot of this pressure on myself, maybe unjustly? YES! It’s my type A, go-getter, fake it till you make it personality. But, none the less, it’s a challenge…and I continue to work on that.

Perhaps the biggest challenge right now is how alone I can feel. I can be surrounded by my closest family and friends and still feel like I’m on an island all by myself. It’s a strange feeling that I really haven’t encountered before. I read in another potsie blog that the longer she was ill the more she started to feel completely disconnected from others, and I guess that’s what’s going on with me? Maybe? I feel so annoyed with my body and my situation that at times it’s very isolating. Because this illness isn’t something that a lot of people have, or that a lot of people understand, I just feel like no one else in my life can actually relate to my world. I also feel like people must be thinking “okay, we get it, you’re sick, get over it already!” although no one has ever said that to me. I know that if I feel exhausted and annoyed with my body, other people must too! Who could blame them!? 🙂 So, I tend to turn inward and keep more to myself…this is a slippery slope I’m on…and I know it! I want so much to reach out to other people sometimes…but it’s just hard. So, here I sit…sometimes very lonely.


So…what can people do to help their friends and family who are dealing with a chronic illness?? I’m so glad you asked 😉  Here are some things that have helped me to feel less alone and a little more supported!

  1. Make them laugh. A lot and as often as you can!
  2. Check in with them…not about their illness…just with how they are doing!
  3. Text them “I love you” or “I’m here if you need anything”
  4. Cook them a meal so they don’t have to…because they will not ask you to do this!
  5. Mow their lawn, shovel their driveway, weed their flowers etc…help them out because they will NEVER ask!
  6. Hug them…a lot…even if they don’t want a hug 🙂 (I’m not a HUGE hugger…but this one really does help!)
  7. Take their kiddos out for an afternoon so they can nap…because they will NEVER ask!
  8. Love them unconditionally…and make sure they know that
  9. Text them a favorite memory to make them smile…”remember when we…..that was so fun”
  10. …chocolate…always chocolate! 😉
  11. “you look great!” even if their eyes are tired and their hair is a mess…
  12. and my all time favorite…”wow, have you lost weight?!” even if you know damn well they haven’t!

And for the other POTS patients reading this, or for anyone with a chronic illness…we may feel alone and isolated sometimes, and I think that is just the nature of the beast, but, we’re really not! We have to remember that this is a marathon, not a sprint! This is a day by day situation that is ever evolving. We need to ask for help…if we have a bad day, cry it out, sleep it off and start again tomorrow. Remember…”no one said it would be easy…they said it would be worth it!”


summer lovin’ had me a blast…

As summer winds down I thought I should write a blog because who knows when I’ll have time to do it again! The start of the school year will be absolutely crazy…and will be even more so this year with Colby starting (gulp!) kindergarten!…more on that later!

This summer has been a wild ride! It’s been full of sun and warm weather, trips to the beach, blueberry picking, swimming lessons, projects around the house, a family trip to Boston, horse rides, exploring, bicycle riding, ice cream, popsicles, picnics and time spent with family and friends. The bonus to all of this?? I was able to actively participate in it all! It’s been a total 180 from last year. Last July and most of August I was bed ridden, this summer, I’ve been a force to be reckoned with! Was it perfect? Well…no. Did I feel GREAT? Well…no. But that’s not the point! I gave my kids a summer full of fun and laughter, and that’s all I ever wanted anyway. My lyme treatment ended (thank the good lord!) and my POTS is at a level that I can manage. I go up and I go down, but I can function, push through it, and be the mom, wife, friend, and daughter I want to be. Do I have bad days? Sure! Do I still need to pace myself and take my time? Yep! Do I need help from others when I flare up? Hell-to-the- yes! But, we’ve got a good thing going here!

11817208_10102557153964809_6191632472302166500_n  11223594_10102561066968119_3418826764306705784_n

11880638_10102556440050499_22275169997987963_nIt’s also been a summer full of changes, and for a mommy with a chronic illness, it’s been so nice to be a part of it all. For one, my “baby”has been gearing up to start school! We’ve been working on letters, and numbers and writing. We’ve been school clothes shopping, searching the internet for the perfect backpack, and this mom has been secretly (and not so secretly…) tearing up at the thought of my little man going to school. The day Colby was born I realized my purpose in life…to be his mom. I can’t imagine that he’s on the road to growing up…okay, time to move along as I tear up again…


Sophie also hit a major milestone this summer…she’s potty trained! YAHOOOO!! All the parents reading this blog will know the joy that this brings into the household!! If you’re not a parent, just trust me…this is like hitting the lottery…for real!

11745426_10102526357765639_1958967252068684500_n  e1034af9d4eb25dbd90064c479be87a5c66857c138e1953dbe23826803407cfa

We had our first visit from the tooth fairy…turns out she pays more than I remember! Can you say “pushover?!” 😉


Our family is just in a really great, happy place right now…and I’m a living breathing part of all of this! It’s a little annoying that my POTS is still along for the ride…but I guess I can’t really blame it…we’re a pretty fun crowd to hang with!

Speaking of POTS…I’m coming off my most recent visit with Dr. Gracin (cardiologist extraordinaire!) and all looks well. We did spend some time trying to figure out these annoying palpitations that have crept in…but everything else is being well managed! Woo hoo! I don’t have to go back and see her for 6 months. For a potsie…hearing “I’m going to let you go until March, unless YOU need ME”…breathtakingly good news!

11891233_10102575370808109_1937572241163889671_n every potsie can relate…those damn stickers were SO hard to take off after the 24 hour monitor!!

Until next time…after I’m back to teaching…and have a kindergartener living in house…oye! Health and happiness to all my blog readers!

The Conference That Changed Everything…

I can’t believe it’s taken me this long to sit down and write this blog! The good news is that I’ve been busy playing with my kiddos all day, every day, so I haven’t had much free time. It’s been a pretty great summer thus far. I’m so excited to tell you all about the Dysautonomia Conference that I attended in Washington DC in July! What an amazing, life changing, life affirming, scary, powerful adventure it was…

DI logo

It’s no secret that people with chronic illness aren’t always the easiest people to travel with. We have symptoms that we have to manage, loads of medication to account for, and in the back of our minds (well, at least mine…) is the all consuming thoughts of the “what if’s…” What if I flare up? What if I need to go to the ER? Where is the nearest ER? What if they’ve never heard of POTS? What if I lose my medication? What if something happens on the plane? What if it’s too hot? What if it’s too cold? What if I have a migraine? The list goes on and on and on. I did my best to prepare for any event. I had extra meds, extra clothes, my binder full of my medical history and diagnoses, I had water, snacks, and things to read to keep my mind off the fact that I was about to hop on a plane for the first time since my ill-fated trip to Kansas City in 2014. I tried to hide my anxiety, but I was pretty much scared out of my mind. I had things under control…at home. I could manage this illness…at home. I knew what to do if I flared up…at home. Traveling was a new frontier, and I wasn’t sure I could do it. The good news is…I did it! The flights were easy and very seamless. My mom and I made it there on time, no luggage lost and no one had to sedate me on the plane…I call that a success!

11737978_10102512503903889_3223522029194197543_nI call the trip to Kansas City an “ill fated trip”…but as you all know, this trip saved my life, and I LOVE that amazing hospital! (see previous posts!)

We also got very lucky with the weather. It was hot, but it was manageable. We rented a car and drove into DC. We had some time to play tourist before the conference started. I am happy to report that I was able to walk around the entire time. I pushed the water, salt, and my meds, but I made it! My mom was the one who actually requested we sit down and take a break! That never happens! It’s ALWAYS me who needs a break! Granted, she had a blister on her foot from her boat shoes…but I don’t care! It still wasn’t my fault we took a break! Woo hoo! Potsie success! 🙂

11750651_10102512502471759_3922752028128022586_nThe conference started with a meet and greet session. They wanted people to wonder around and meet each other. Now, this is great in theory…but this is where I had a mini break down. As I walked off the elevator, I really expected to see people who looked like me…people carrying around water, salty snacks, and maybe wearing compression socks (such a cute look in 100 degree heat!) What I did not expect to see were people in wheelchairs…people with service dogs…people with ports in their chest…people who couldn’t stand at all…maybe I was naive, or just plain in denial, but this sight knocked me off my feet. My eyes welled with tears and I told my mom “I can’t do this!” I was scared. I was sad. I was intimidated. I was lost. My mom swooped me into the breakfast room and made sure I ate (always a good idea!) and took my meds. She told me that we could take it slow and that I could do it. I franticly texted my cousin, who just happens to be one of my biggest cheerleaders (love you, Ames!) and she said the same thing “you can do it! what blessing that you are at the level you are at!” Between the two of them supporting me, I braced myself and we went into the conference…and never looked back! 🙂


Being in a room full of doctors, patients, and caregivers was absolutely the most amazing experience I’ve had on this journey with POTS/Dysautonomia. These people just get it. They all understood what I meant when I said “I have brain fog so badly right now!” No one cared if you needed to excuse yourself to get some MORE water. It was totally fine if you needed to lay on the floor and put your feet up to stop the blood pooling. Everyone just accepted everyone for where they were, and who they were. It was like we were all a part of this crazy f*cked up club (that NO ONE wants to belong to…but we do!). The break out sessions were AMAZING. The doctors that spoke were so knowledgeable, and so funny. There wasn’t a session that didn’t include humor. They were honest, and hopeful. It was clear that there is no cure for this illness. There is no magic pill, and I knew that, but now I know for sure. There are ways to manage symptoms, but POTS is POTS is POTS, and it’s here to stay. I did learn that I am one of the lucky ones…as I mentioned above there are people who are completely debilitated by this syndrome. Some people can’t get up on their own two feet let alone work and play with their babies. I thank my lucky stars for being in the place that I am in. Even on my bad days…I am so blessed! *Thank you Amy for pointing that out to me*

I was able to participate in a major POTS study through the Mayo clinic while I was there. They are working on trying to find an autoimmune connection, and I cannot wait to see the results!! They also released a POTS survey to help gather more information about POTS…if you are POTSIE reading this…PLEASE take some time to fill this out! We need to make sure the medical community knows whats REALLY going on with us! The link is here:

Now, I don’t want to speak for my mom, but she looked so happy to be talking to other people who had a potsie in their family. There were other moms, other family members, and other professionals she was able to make connections with. This is one of the most amazing parts of this conference. You really feel like you’re not alone! I cannot imagine how she must feel watching her daughter go through this, as a mom it’s pretty unimaginable! But, I’m so happy she came with me and gave me the push to keep going. I can safely say this changed both of our lives forever.

I won’t bore you all with the specific medical information I gathered…but the bottom line is that I have an amazing doctor (who was AT the conference too!!!!!!) and I have a good treatment plan in place. It was pretty clear that exercise was a “must have” so since I’ve been home I’ve been back on the work out wagon! I bike 5 miles a day, I do weight training, and core work. Do I love it? NO. But, I’m pushing ahead! I want to have the strongest, healthiest body I can have…I need that to keep kicking POTS in the butt!

11755797_1654021748168493_9158293539763087717_nme, my mom, and Dr. Gracin! we’re quite a POTS kicking trio!

To wrap up…it was amazing. Simply amazing. I cannot wait to go back next year and meet more patients, doctors, vendors and families. It’s so nice to be part of this community…even though I wouldn’t wish this community on my worst enemy, the POTSIE sorority really isn’t too bad…we’re a fun-lovin’, hard-workin’, butt-kickin’ bunch! ❤